Friend,

I'm writing this to you here because your lack of including a contact e-mail leaves me no other way to contact you.

I had the most amazing experience today.  In a bar in NYC, there were five of us CAH women together sharing a libation.  It was bigger than amazing, it was down right extraordinary given that maybe two years ago, less than a year for some, we thought we were the only ones out there in the whole wide world.  It's the funniest thing too.  Actually funny might be the wrong word.  Disbelieve might be better, because all of our stories--with the exception of very minor details--were the same. We are truly a unique and interesting group.

We have all met through our determination to make a difference in how little girls with CAH and others--little boys and girls with sexual anomalies--are treated.  Believe it or not, we have a very strong activism group going to abolish what we see are wrongs, namely abolishing cosmetic surgery and unnecessary cutting on genitals without informed consent of the patient.  This does not include situations where such surgeries are medically necessary; in those situations the ideal is to fix the problem and leave the sensitive, undamaged areas alone.  It also does not include vaginoplasties when the girl is a teen and less likely to require the surgery again. 

Part of our activism includes posting on this board because we have CAH  (The actual organization is much bigger than CAH and is concerned with these horrible surgeries across the board, for boys and girls, and encompasses a myriad of conditions that cause genital anomalies). We read the board because we are interested in other aspects of the disease too.  For instance, another goal is urging parents to make sure that their children, no matter whether boy or girl, seek counseling for their child.    We don't post often on many issues, but sometimes, even in our old age, we learn things.  For instance, because of Aimee's dental post, I will be sure to ask the dentist next I go about the health of my gums. 

When we, meaning the many women with CAH  who are against surgery, post on the issue, all of us find it most appropriate to make our point and move on. You might get the discourse going for a few rounds one afternoon  and evening.  But there comes a point you have to be satisfied you made your point and move on.  You're not going to convince everyone of your side; it's just the way it is.  At that point, the best you can hope for is that the parents, particularly the mother, remembers a meaningful exchange and sees the wisdom in looking up the current activist group 20 or 30 years down the line.  You can't sit in front of your computer all day, going tit for tat.  It won't work.  We have convinced many on this board, by politely bringing this topic up and giving those who may be considering surgery for their child and having second thoughts, and have convinced more than one to wait.  Of the parents who do not have to deal with the issue, we have convinced several to support us.  We have found huge support from parents on this board who chose this surgery for their little girl.   Now that their daughters are reaching sexual maturity, a great many are realizing that maybe it wasn't the right decision.  This is based on what we hear from parents.  One of the unfortunate things about CAH and it's treatment, is that so many girls end up living a life of shame and secrecy, afraid to let their own guard down and are not quite ready to speak up for themselves.  Or they are bewildered by all that has occurred.  It's their mothers we hear from regularly, speaking up for their daughters, seeking reassurance that they thought they were making the right decision way back when.  It's in hindsight that the issues come up.

In fact, by not treading lightly and recognizing you have done everything you were able can do damage to our cause.  While we are taking three steps forward here, you are taking it one step back by pissing everyone off.  It's not even so much the ones who are responding, it's others too.

You've got great energy, anonymous.  I urge you to contact me, and we can use that great energy to redirect your vigor into a forum that can make a difference. You obviously are knowledgeable about your condition, and you can make use of that knowledge.  You are smart, and you can use those brains to help us enact change where it will matter--in the medical community.  Maybe not tomorrow, maybe not next year, maybe not even in five years.  But it will eventually change.  No matter what continent you are on, we can find you the audience and guide you to making a difference there.  The best part of it, you will meet other CAH women with a common goal, face to face.  Come and help us make that change happen. 

Finally, before I goodnight this topic at least for myself, I need to clear something up:

The first anonymous on this post, I can assure you it was not the same anonymous as the others!  And no, it wasn't me, but I do know who wrote it and know for a fact it is different people.  In fact, someone even asked if I was the other anonymous.  Again, it was not.  Need proof?  Check the ISP! 

Second, I read with amusement about the identity/privacy issue.  For the record, my real name is Betsy.  The email I use is the one I use publicly because posting emails on boards like this result in spam.  Anyone who takes a moment to send email in response to what I write gets my full name and my regular email address too.  My name in concern to this issue is public and known if you know where to look for it.

Best

Betsy